Lily is 5 1/2 months old and continuing to do well. We haven’t had any recent doctors appointments, so I don’t have any new news there. Lily’s first steps therapist is still very encouraged by her progress. According to her developmental list of milestones, Lily is on track…or very close to it. She is grabbing at objects more and being more interested in “playing”. Her sweet smiles are such a nice reassurance.

We still very appreciative of everyone’s prayers. Most days I don’t find myself dwelling in the unknowns of the future. However, often when I see other children with development issues, I’m reminded that we may still have a long road. When we were in Bloomington, IL visiting Carl’s family for Christmas, we ran into a guy that has been following Lily’s story and praying with his daughters every night. His daughters were excited to meet Lily in person and were so sweet. I think we all had tears in our eyes. I love seeing God’s heart in a child’s faith and honest words. It was humbling to meet them and we are forever grateful.

Lily survived her first Christmas with both our families. Lincoln was very excited about all the presents he got to open…his, Lily’s, and pretty much everyone else’s as well. We had a really nice time visiting and being with family, now we are recovering!

Here are some pictures…

{Christmas at home a few days early}

{Christmas at the Frosts}

{Christmas at the Kuchars}

{Just Lily}

{Lincoln at the Lincoln Park Zoo}

{My cuties}

{What happens after many joyous Christmas celebrations…}

Days are feeling more manageable around here. I’m not having to hold Lily quite as much during the day which allows me to spend more quality time with Lincoln. This all helps how many breakdowns Lincoln has during the day. Lily is also sleeping better at night which really has given me hope that there is light at the end of the tunnel. I don’t like that my mood and sanity is determined mostly by sleep schedules, but I guess that’s where I’m at right now.

We had a neurologist appointment a few weeks ago and another EEG (she had two when we were in the hospital). We were kind of disappointed with the results. She still has potential for seizures on the right side of her brain, however the slowness is gone. We are in the process of switching her anti-seizure medicine for one that is better for long-term. Although I thought I would be okay if the test came back not completely clear, I was still pretty bummed. She is really doing well with developmental things, so I was hoping the test would show that improvement as well. The neurologist also said that with the amount of damage they saw in Lily’s MRI, if she comes out of this with no effects from the meningitis, she would be very fortunate. That wasn’t pleasant to hear either. It’s always a reality check with the neurologist. For a day or two, I was pretty down. But, I know she is doing so well. I can see her catching up to where she should be every day. We’ve been very encouraged with the first steps therapy. We had to get a new therapist because our old one had some family issues to tend to. The new therapist hasn’t seen Lily as much, but she is very pleased with where she is at right now.

I love to see her smile. I think the fact that Lincoln was such a stone-faced baby makes every smile that Lily gives me a true miracle. I see Lily everyday (and feels like every minute of everyday), but when the nurses at our doctor’s office see her and say they think about her all the time and know she’s a miracle makes me remember how far she’s come.

We traveled for Thanksgiving to see both families. Lily rolled over some more on Thanksgiving and started babbling. Now it feels like she is “talking” all the time. Lincoln found some real gems from my youth…

…my HOTT pink glasses from when I was 10 years old. I found my old blanket from when I was little. Oddly enough, we left Lincoln’s blanket at my parents’ house. Yikes. I didn’t realize how attached he is to little Lambie. He was so shocked and devastated when we told him what happened. It was like we had forgotten Lily. The pictures my parents sent of Lambie playing with toys at their house helped. And when we got the package in the mail, he didn’t put it down the rest of the day. I’m glad we don’t need to wake up to crying in the middle of the night because he misses Lambie. Looks like I might be ordering a back-up.

Lincoln is taking a picture of her with his Buzz Lightyear phone.

It looks like he’s trying to help her…but I think he is saying that she needs to get off his toy.

Everyone loves the new iPad. The “no touch” policy didn’t last long.

Last week we visited the neurologist for a check-up for the first time since the hospital. We had an appointment with a nurse practitioner because the doctor we were supposed to see was sick. The doctor we were supposed see turned out to be the same one that we had seen in the hospital and of which we were not a fan. So we told the nurse practitioner that we would like to switch to a different doctor for our next appointment. This other doctor was in the office that day and dropped by to meet us and take a quick look at Lily herself. Win Win!

Overall, it was a really encouraging appointment. The nurse practitioner was really impressed with how Lily looked. She said after looking at her chart with all that Lily has been through she was expecting a totally different baby. Lily was tracking well with her eyes at the appointment. They really didn’t see many areas of concern at this point. She wasn’t able to get a reflex in one of her legs, but she wasn’t concerned since it can be hard to check that on a little one.

We are going back in the middle of November to have another EEG done which will determine when she can come off her anti-seizure medicine. They said the last EEG didn’t look pretty. So even though we aren’t sure if she had a seizure, it is still a good reason for her to be on the medicine. If the next EEG looks good, then we will probably start taking her off the medicine. And if there are still spikes and areas of concern, then we’ll probably move to a different medicine that will be better for long term…potentially years.

Lily took her first trip this past weekend to a retreat for our church. Lincoln went with my parents to the cottage in Michigan and had a blast riding a pony, feeding cows on the farm, and walking on the beach. Lily did great and did what she does best…sleeping in my arms. This worked out well at the retreat because I could go where I wanted and didn’t need to worry about nap time, but it’s starting to pose a problem at home. We should probably work on that.

Lily is smiling more, not all the time, but slowly more and more. She thought the bunk bed where we slept this weekend was particularly funny and smiled long enough for me to take a picture. Her first one!

This is a demanding stage of life. And with her challenges it adds even more stress and anxiety. We pray for sanity most days and are thankful for the evening breaks. Over the last couple weeks Lincoln started climbing out of his crib and has transitioned into a big bed. The main change is that he is no longer napping. Ugh! Lily has been sleeping well at night…but needless to say, we all need a little more sleep.

Thank you Jesus for the miraculous healing in our sweet baby. We pray that you continue to work in her little body and that there are no traces of this illness other than the trust and faith in you that has been strengthened in us and so many others.

The second part of the video is of Lincoln singing some songs from story time at the library. Carl got the privilage of seeing Lincoln in his element at story time this past week. He is hilarious and always in the center of the circle. His little buddies (or homies) are usually there too which is fun to see how they all interact and how different they are. Lincoln normally has a problem sitting down when he’s supposed to sit because he is so excited about dancing, jumping, and talking with Miss Beth the story time lady. He likes to tell her what is coming next or what he would like to do next.

We made our first trip back to Riley after almost two weeks. Lily had an ultrasound of her leg that has the clot and then we saw the hematologist. Her leg is still a little swollen and has some slower blood flow, so they think the clot is still there. This isn’t really shocking to anyone, but means she’ll be on blood thinners for a while longer. The real bummer is that they mentioned Lily potentially having to stay on the blood thinners for even a year! Sometimes if babies are taken off the blood thinners too early they have the risk of their leg always being slightly bigger than the other. We don’t want an angry teenager with one leg bigger than the other. I am still convinced that my clot leg is still a little bigger…so I understand.

We are adjusting back to “normal” life. Carl goes back to work in a week which will be another adjustment. But we’ve enjoyed easing back into things slowly. Lily is doing really well. She is back to being a pretty good baby with little crying. We think she is starting to track us with her eyes. This is a little slower than normal babies since she was doing it before she got sick, but it is big progress for her now.

Lincoln likes having us all back together. When we are all in the same room he’ll say, “the whole family is together.” And when Lily is crying he says, “sometimes babies cry, mom.” He has always been very sensitive to when babies or kids cry or get hurt, so it’s good that he’s learning to react more calmly. Although occasionally he does still fall to the ground saying, “pick her up mom, pick her up” with his hands over his ears when she cries.

Here are some pictures from the last two weeks…

{lincoln really loves daddy. they get a lot more hang out time these days. most of time it’s great…but not when he yells at me before bed “i want daddy”}

{still working on smiling on cue}

We’ve had a busy couple of weeks. We had a baby, had visits from both sets of grandparents, found out Lincoln’s long standing battle with a cough was really a pretty bad case of pneumonia, had to take Lincoln to the hospital, had another visit from my parents to help out with the hospital stuff, and are now dealing with me being sick. I was just about to post about Lincoln having pneumonia Thursday night when after we put him to bed he couldn’t stop coughing. I called our doctor and knew from what she was saying we would end up having to take him to the ER. However having an awesome doctor, she called the pediatric floor (the same floor I ended up on after having Lily so we could have a private room) to see how many beds they had left. She got the last one and told us to make our way to the hospital so they could start him on a more powerful antibiotic. Of course I couldn’t go with Carl and Lincoln to the hospital since it would not be a great place to have a newborn. I am pretty emotional due to my pregnancy hormones and was bawling as they left the house to drive to the hospital and cried pretty much the whole next day. Lincoln was really excited to go back to the hospital to go on the elevators and that he would finally get to see the moon and stars. When they stepped outside at 12:30am to get in the car, he started singing twinkle twinkle little star with hand movements and all.

Even though I really wanted to be there, Carl is pretty sure I would have had a major breakdown witnessing the 45 minutes it took the nurses to get an IV hooked up. They finally got one started in his foot after trying both arms and the other foot. Lincoln is now officially freaked out of all nurses. He ended up being in the hospital for two nights with Carl by his side the whole time. They have turned into quite the pair. I was able to go visit a couple times leaving Lily to cuddle and sleep with some friends. Every time I talked to Carl the nurse was bringing Lincoln something new to play with or a new DVD to watch (all Dora of course). He ate a lot of ice cream and popsicles and probably ate more at the hospital than he has in the last 2 weeks combined. Since he’s been home, his appetite has grown tremendously. According to Carl, Lincoln is pretty funny in the middle of the night saying random things that made them both laugh. After the nurse came in to check his vitals he said, “Daddy? Pleeeease play Ghost Go!” The back story on this is that back in May we were at a support meeting with a family that had 3 boys. The boys were a little done entertaining Lincoln and wanted to play the game Ghost Go on the Wii. So they kept telling Lincoln to ask us if he could play it. Now it’s a running joke that he is wants to play it. It’s even more funny at 3 in the morning.

My parents came to help out and got here Friday night. On Saturday, the same day Lincoln came home, I started not feeling well. So, it ended up being even more helpful to have my parents here to help out since I was pretty out of commission most of Saturday night and some of Sunday. It’s been a long couple of weeks, but we’ve had a surprisingly good attitude most of the time. Thankfully, Lily is doing awesome. Although I’m completely freaked out she is going to catch something, she has been a huge blessing in how laid back she is and low fuss. It’s funny to think about how she has no idea the chaos that surrounds her.

Since Lincoln has been home, he is much more back to normal. He didn’t really act sick all the time before which I think threw the doctors off at diagnosing him. But now I see him getting back to what he was before and it’s very nice!

BEFORE:

AFTER:

The flowers Carl’s dad planted spelled out “It’s a girl”

In the back he planted some lilies for our Lily.

Thanks!